Author: Kat

rachel with batten disease starting 10th grade in denver

Rachel started 10th grade this week and is having a great time. She has a new teacher named Ms. Nicole and 3 bus drivers and aids! She is doing great and enjoying being back to school and I am having a bit of a break and Rachel having a break from me. Her walking is quite impossible, watching her fall apart has been killing me.  It’s emotionally hard, physically hard on me and on Rachel but her appetite is great…

Cure in the Nick of Time
jeep lift

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal? Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500 Not being able to do the things we used to do and go the places we used to be able to go is taking…


Back to school is exhausting, for me (and maybe not all parents with kids like mine) because of the nature of having a child with a degenerative disease. Talking about loss of abilities that came about during the summer… knowing this is one less school year I will have with her. Meeting your child’s new teacher for the first time today, who seems really nice and watching her not being able to understand your child. Knowing you won’t be there…


We just got back from 12 days in Boston surrounded by loads of people who love us.  Here are some pictures of family with Rachel.


This one is for Janet and Joe.  Thank you for sending Rachel a gift card to Cheesecake Factory, she was so excited to take her Granny and Granddad.  Granddad took these pics and I am passing them along. <3